Cancer again, and finding out by accident

A week ago I had a completely appalling conversation. Short, but devastating. I suspect it’s something that happens fairly frequently. As an indicator of where we are with person-centred care, and ‘great conversations’, it leaves a little to be desired. It went like this.image

Last autumn, after a regular scan and Oncology appointment, we set a date for the next appointment. I’ve had lots of scans since my first diagnosis in 2001 (50+), so we set a bigger interval than usual, and the appointment was made for August 5th. A couple of months ago the CT date came through and it was for Friday July 1st, five weeks before the appointment with the consultant.

So, I had the scan at the beginning of July, and I got a call week later from the Oncolcogist’s secretary, asking would I like to come in on July 15th, instead of waiting until August 5th? This set alarm bells ringing, so I asked:  ‘Should I be concerned about the appointment being brought forward?’ ‘Oh, no,’ said the Oncolcogist’s secretary, ‘we haven’t had the report yet.’

Relieved, and re-assured, I didn’t pursue this, and assumed that someone somewhere had noticed the 5-week gap. So we negotiated a date for July 15th, at 4pm, at the end of a long Friday afternoon clinic.

So far so good.

The conversation

On the Monday – the next working day – it all went pear-shaped. I got a call late morning, from a young women, from admin: ‘I understand that a colleague called you on Friday to arrange an appointment for 4pm this coming Friday?’

Me: ‘Yes…’

‘Well, the doctor now has to leave at 2.30pm…’

Now, there wasn’t actually a break in the conversation at this point, but in Fiona World, time stopped and in my head I was shouting: ‘If the doctor has to leave early, bounce my appointment. Let it be put back a couple of weeks. Please let it not be a priority. Bounce me, bounce me, bounce me.’

‘So…’ she said, ‘Could you come in at 2 o’clock so that the doctor can see you?’

Shit. So, really not ‘bounceable’. I had already (and I think innocently) been jemmied into the back end of a busy Friday afternoon clinic. Now the busy clinic was being curtailed, and loads of people would be getting postponed, moved, cancelled. And I – the Johnny-come-lately who wasn’t originally going to be seen until August – was suddenly the appalled owner of  one of a tiny handful of ‘golden tickets.’

I knew there was no point trying to get any more info or reassurance out of the young woman, who had clearly been given a task and a list, and had neither the knowledge nor the authority to disclose anything further. I didn’t try.

So I accepted the appointment. She said something like ‘That’s lovely then. Good bye.’

And that was that.

There isn’t a cancer patient in the world who wouldn’t jump to the same conclusion I did: that the scan result was ‘significant’. Discussions had to be had. Possibilities weighed up. Plans needed to be made. Clearly my renal cancer had returned.

The consequence of the call

How can this happen? How can anyone think that this is a good way of getting information to a patient? A useful conversation to have with a patient? And hasn’t anyone considered what this looks like from the patient perspective?

I – we, thank goodness – were left to sit out four days until the appointment, with no option but to speculate on the precise scale of the shit-storm that was about to be visited on us. You can imagine what was going throug our heads: from the worst – untreatable tumours everywhere, through more ‘challenging’ or multiple tumours in my bones/head/liver; and difficult/risky surgery (again)  followed by lots of shite; down to the best outcome in this surreal world – a single lesion that’s reasonably easily-get-at-able.

The level of completely unintentional carelessness that this conversation emelodies is difficult to describe.

This is an example not of ‘person-centred care’ but something you could only call ‘patient-orientated carelessness‘.

  • Either no-one considered the effect this type of conversation would have on a patient, which you could characterise as a ‘not thinking’, ‘careless’ type of carelessness. Like teenagers with a stash of dirty plates in their bedrooms, because it just hasn’t occurred to them to bring the stuff downstairs. No-one had even considered what impact the conversation might have on a patient.
  • Or the effect was considered, but no one thought it mattered, which amounts to an actual ‘lack-of care’ kind of carelessness. Worse, in fact.

But either way, I t’s actually a complete absence of care, or of caring.

The rational for the process

I completely understand the policy that says that you don’t want to impart bad news to a patient over the phone – distressed patients, no support, no-one with them. That you really want a proper conversation in appropriate surroundings with support and information on hand.

But the way that this was done – and I’m sure this wasn’t a rare occurrence – meant that I might as well have been phoned with the stark news. Even the most difficult conversation with an oncologist or a nurse over the phone has to be better than effectively getting the same news from a poor lass in admin, via a conversation about appointment times.

Because the way that this was done meant that I was, effectively given the bad news, but accidentally, by a poor lass from admin who almost certainly had no idea what the conversation meant at my end of the phone line.

So I got the bad news anyway, by accident, without any input from a professional, or any support. Lose-lose.

To reiterate, it was perfectly clear and unambiguous to me what the call meant. But the system, the process, the pathway, maintains a pretence that it’s ‘just a call about an appointment time’.

Does the system think I haven’t got a brain???  That I can’t put two and two together?

What’s the solution?

So how should we be reallocating and prioritising appointments without letting the cat out of the bag? As far as I can see, the only solution is to ensure that all patients are seen in a timely way after a scan, so that no-one – regardless of the outcome – has to be ‘brought forward’ and alarmed in the process.

The result of the scan

Yeah, my cancer has recurred. It wasn’t entirely unexpected, because we’ve always known the cancer – characterised as ‘oligometastatic’ – was more than likely to come back and bite me. It’s a small-ish lesion, just one (at the time of writing, at least), in my right, remaining, kidney. It’s one of the strange things about Cancer World (CancerIsUs?) that it comes as a relief when it looks as though there’s only one tumour.

We’re probably going to blast it, in a process called pulsed radiofrequency ablation. Should be do-able. Shouldn’t be as bad as the last go-round’, which involved a Whipple’s. Then we go back to scanning until the next little fecker turns up.

 

 

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14 thoughts on “Cancer again, and finding out by accident

  1. Dear Fi

    So sorry as I said on Twitter. Are you still going to be at Gill’s on Saturday?

    Love you and love to Howard

    Xxxxx C

    Sent from my iPad

    >

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  2. Sorry to hear you were right, as per our last email exchange and yes, I thought the same too. As they say “all the clues were there.” I do hope blasting it goes well and will be keeping fingers crossed for you.

    Hats off to you for identifying the general issue of poor communications process by which you ‘found out’ by accident that the cancer had returned in a very dis-empowering and non- person centred way.

    It took me back to 1971 – yes I’m that old- when I was 17 and my mother had been discharged from hospital, following a hysterectomy that she had been fast-tracked to have. No one had mentioned cancer prior to, during or on her discharge but “all the clues were there.” The day after she was discharged we had a house call from one of the GPs at the practice, who we’d never met before, to tell mum that she had had cancer of the cervix. She went on to say that mum needed further treatment which would not be pleasant and she might not survive the cancer or the treatment – but that she- the GP- had no further details. An appointment had been made for her at the regional hospital in 4 days time to see a consultant and she would find out more then.

    I was alone in the house with my mum and had to deal with my mum’s emotional meltdown when the GP left rapidly after delivering, in a very dispassionate and swift manner, this awful news.

    Whilst the news of recurring cancer can’t be wished away how the news is given can make a huge difference to the patient and the people that love and support them. Surely this is not too hard to organise, so that it can be done in a person centred and compassionate way which is basically about systems and processes I.E. Right person available at the right time with the right information.

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    1. Hello, I’m a cancer patient in the waiting-for-the-next-one phase so your experience really spoke to me. And it reminded me of something. I found the first time after a routine mammogram led to a protracted wait in the waiting room, completely unaware of what was wrong but with an increasing sense of foreboding. And I actually found out I was in trouble when a junior technician came out to the waiting area and asked me — just me, not anyone else waiting — if I wanted a cup of tea.

      These moments are entirely unambiguous to patients and it really struck me how untrained so many staff are for that moment of accidental but deniable disclosure.

      I really appreciated this post, and hope all goes well for you.

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      1. Hello Kate, and nice to meet you.
        Thanks so much for writing to share that. That’s another example of people just not understanding that they can communicate whole worlds without necessarily saying anything! Health care professional need so much more training in communications… Fingers crossed for you.

        Liked by 1 person

      2. Kate, I’m thinking of updating the blog (or maybe write a new one) with examples of these poor communications. Would you mind if I used your example, anonymised?

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    2. Yes, examples are coming out of the woodwork apace. That was pretty appalling. And the fact that it was so long ago hardly makes it forgivable. People don’t understand that there are many, many ways of communicating, and that they don’t all involve speaking…

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  3. I’m so sorry it has come back.

    Reminded me of when I was waiting for the results of my breast lump biopsy.

    ‘What happens now?’ I asked
    ‘Oh, if everything’s OK we will ring you’ she says ‘if not we will send you an appointment letter’

    We have never listened so hard for the phone to ring, or stayed in, just in case it did.

    Fortunately it did but I walked away thinking ‘do they think I’m feckin stupid? That I can’t work out what the phone call vs the letter means?’

    I know they were trying to keep me ‘informed’ but this was cruel in my opinion.
    Anne xxx

    Liked by 1 person

    1. Honestly??? And if the phone call doesn’t come, and you get the letter? It would presumably just have appointment details in it but it might as well have a big 3-inch CANCER stamp on the outside of the envelope!! Nominally it contains only admin information – Thursday 2.45pm – but it bears a COLOSSAL, AND COMPLETELY UNAMBIGUOUS subtext, WHICH YOU HAVE TO BEND DOWN AND PICK UP OFF THE DOORMAT! I’m going to tell people about that, if you don’t mind? Cruel, heartless, person-centred carelessness.

      Liked by 1 person

  4. Hi Fi and greetings from Nairobi!
    So very sorry to hear your news and the way you ‘found out’. But I know you’re a personal fighter as well as a great campaigner. Your story was so well written (as always!) I’m sure it will help many others, as well as making health professionals and assistants think more carefully about their indirect as well as direct communications.
    We’ll be home tomorrow and I’ll ring then if that works for you.
    Much love to you and Howard and Franks (thank goodness you have such a good team!)
    Carole xxx

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